It is lonely being a Carer

Life as a Carer

Anyone who is chronically ill needs a carer, or carers.

Last week I shared an item that I reacted to… that of a man, who was refused a flight booked by a hospital for a lung transport.

The news article (Adelaide Advertiser, South Australia) which prompted the blog was about a man with Pulmonary Fibrosis who had come up as a match for a lung transplant and been refused a seat on the flight the hospital doing the transplant had booked. I will not go into the details of that post, although I do need to make an observation.

One… there might not have been oxygen available on that flight for the man. This seems strange since the flight was booked by the hospital who would have done the transplant had the man been able to arrive there in time.

However, it also stirred up my thinking about the Carer… the person or people who care for the person with a chronic illness.

Unless a person who has a chronic illness lives alone and has no visitors, that person has at least one Carer.

Life as a Carer…

Life as a Carer often involves being a ‘parental’ figure. Often the person being cared for does not have an accurate view of his or her condition. This is a hard part of the carer’s job. Being the one who assesses what is needed for every hospital appointment, how to travel there safely and what medications might be missed/needed during the time away from home.

But carers often have the unenviable role of ‘nurse’, and – there’s more…

Carers often have to learn…

Carer has to learn

About the disease, its treatment, and management

About the medications prescribed including what they are for, any special instructions and potential side effects

Sometimes these put the Carer into the role of ‘antagonist’ to the person they are trying to support, often the person they love.

The carer needs…

  • Skills to help manage the fatigue, pain, frustration, and isolation that people with chronic disease often get – as well as their own.
  • To be able to communicate effectively with health professionals by answering questions accurately, asking your own questions and making sure you understand the information provided to you. (Talk about the information needed with the person you are caring for, if possible, and write the questions down and take them with you.)

One of my huge frustrations, and it was my late husband’s also…  was the specialist/doctor wanted him to answer questions. However, he did not understand the terms they used, and having been a nurse, I did. But, at least to begin with they did not want to hear my observations on his condition.

This had a counterpoint (opposing viewpoint) – sometimes my observations and his – clashed.

I remember attending a workshop for carers… At the beginning we were given a list of all the roles a Carer performed. It was a long list.

Something else a Carer needs –

… Understanding – or at least acceptance.

If you know someone who is a Carer – try to ‘cut them some slack’ – one of the first things to happen is they become ‘unreliable.’

  • They cannot make arrangements to have friends come to visit, or go to visit them. Many times they will have to cancel any arrangements. So, either the friends drop them, or they withdraw rather than face the embarrassment of having to cancel… again.
    • You will have to understand. (Or give up on the person.) It would be kinder to expect nothing and accept that it is a black or white spectrum. There are no shades of gray in this kind of life.

If you decide to care for the Carer… and the person.

  • Be understanding.
  • Accept that arrangements might change without notice, and do not take offense if they do.
  • Be a person they can trust with their feelings.

Being a Carer for a loved one is a very difficult ‘role’, so you need to accept that it is a way of life – their way of life. Lives which revolve around medical appointments, tests, medication times, and sometimes hospital admissions. These are the ‘outings’ for the Carer and person being cared for.

Being a Carer – or a person needing a carer is a very lonely place to be. Ask any Carer and they will tell you how difficult it is to hide their feelings and struggles from the person they are caring for. Ask anyone needing care and, depending on their insight about their Carer, they will tell you how much it hurts them to see the person caring for them struggling to cope with their care.

Whether the person is a Carer of an adult, a child, or someone in between, caring for someone with Alzheimer’s disease, or any form of dementia – in spite of differences in the type of care, they face the same loneliness. Sometimes the Carer never ‘gets’ their friends back. Without a supportive family or network, isolation sets in and becomes a way of life.

On the outside, isolated, although near people. It is a lonely place to be.

Loneliness of a Carer, in a crowd

Just thinking, and sharing.

Susan

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